The Power of Data is Expanding: Reflections from the CMS HL7 FHIR Connectathon for 2022

I recently attended the CMS HL7 FHIR Connectathon for 2022. As always, CMS, HL7, and the greater FHIR community put on an amazing virtual event. All the technology showcased should be given a massive shout-out for the advancements in furthering Fast Healthcare Interoperable Resources (FHIR) into an industry-changing standard. I very much enjoyed hearing from both CMS and ONC about their commitment to FHIR and to what it can do to improve healthcare in this country.

Two projects stood out to me, not because they are more important (all the work presented is driving real benefits for healthcare) but because these projects are expanding the boundaries of what we generally think of as healthcare data in ways that show how powerful data can be. Those projects were Post-Acute Care interoperability (PACIO) Advanced Directives Interoperability (ADI) and The Gravity / SDOH Project.

PACIO Advanced Directives Interoperability

The PACIO ADI track at the Connectathon covered “a new implementation guide (IG) that provides a standard way to enable the ability to create and share Advance Directive Information for care planning and delivery” PACIO is supported by MITRE, CMS, ONC, and many other stakeholders (clinical, technical, and industry associations) and future versions of it will address encounter-centric patient instructions and portable medical orders for life-sustaining treatment.” ( The power of PACIO ADI was demonstrated using a sample patient who created multiple Living Wills, Power of Attorney, Personal Advanced Care Plan, and other documents. These documents were easily accessible by both the patient and their care team via a number of interfaces. The workflows and technology demonstrated in the session were quite impressive, but what I believe is even more important is the recognition that this data is a critical part of a patient’s medical record.

Making these end-of-life documents easily accessible is a great example of how healthcare is about the whole person and not just a set of measurements and diagnoses. By including this personal information at the same level as other medical data, it allows caregivers to respond appropriately. Another small but meaningful example that was shared in the session was the story of a patient who didn’t like her feet to be cold, and with the inclusion of that fact in her medical chart, a nurse was able to act on that information and cover her feet with a warm blanket even when the patient could no-longer communicate verbally.

The Gravity / Social Determinants of Health (SDOH) Project

“The goal of the Gravity Project is to develop consensus-based standards for the exchange of social determinants of health (SDOH) data within the health care sector and between the health care sector and other sectors for patient/person-centered care, care coordination between the health and human services sectors, population health management, value-based payment, quality reporting, and clinical research.” (

At the FHIR Connectathon, the Gravity Project demonstrated a couple of workflows where SDOH-based questionnaires were presented to patients via an app or portal and the results of the survey prompted actions by the providers such as referrals to community-based organizations. It was particularly interesting that multiple technologies have been written to render FHIR Questionnaire resources to provide dynamic forms to users. But, as above, the important advancement here is that our healthcare system is recognizing that the whole person and their circumstances are critical data assets to gather and leverage for their care and successful outcomes.

Expanded Healthcare Data and Upcycling

At Diameter Health we are the national leader in clinical data quality and interoperability. We specialize in Upcycling clinical data – which means that we have a fully-automated solution that normalizes, enriches, and aggregates multi-source, multi-format clinical data with industry-leading speed and scale. At first, it may not be clear what Upcycling clinical data has to do with Advance Directives (AD) or SDOH, but what we know to be true is that if we are going to be able to deliver on these impressive initiatives, we must consider AD and SDOH data is actually utilized. Without Upcycled clinical data we cannot realize the full value of either AD or SDOH.

In 2016 MD Anderson Cancer Center abandoned its $62 million project with IBM Watson Health to do cancer treatment plans. One of the complaints about the project was that IBM Watson was unable to consider the preferences and life circumstances of the patients. One of the hurdles here was teaching IBM Watson to do so, but an even greater hurdle was the lack of access to the data surrounding those preferences. IBM Watson was already good at dealing with unstructured data, but since this data was not part of the record at the time it was impossible to solve that problem. Similarly, if PACIO ADI and Gravity are to be successful, previously unstructured data should be a first-class citizen on patient records to support all sorts of analytics and advanced use cases.

Adding to the challenge is that, increasingly, clinical data is coming from multiple sources (which is a great thing) but those sources don’t always agree on how to document things. For example, at Diameter Health, we have seen over 40 different ways of coding a negative COVID-19 test. That is just the negative indicator, let alone the test itself. What follows is that if you want to build associations between SDOH results and COVID-19 results, this variability can wreak complete havoc with your model. You can easily end up with weak associations that should be strong and vice versa.

The above example shows how Upcycling clinical data can unlock the power of AD and SDOH on a population health level, but there is also value on the patient level. The use case for PACIO ADI is all about a patient moving around. Either physically moving from state-to-state, as demonstrated at the CMS HL7 FHIR Connectathon, or from provider organization to provider, as they leave one care setting and are transferred to another. In both of these cases, their data needs to move with them. However, if the two systems code data differently, it may be hard to understand or even completely useless in the new system. Imagine the COVID-19 example above, where the home nurse has a nice user interface that shows a big green or red check mark next to the COVID-19 status for the patient. This is based on the latest test, and when the patient comes home from the hospital, their electronic records show a COVID-19 test was done. However, the hospital system codes negative in a different way than the home health provider. Now the nurse has no idea what the COVID-19 results are and will likely request additional tests.


Healthcare data is becoming more fluid and more holistic. This is a wonderful thing, with a massive potential to improve outcomes and reduce costs. However, if we don’t take the quality of the data seriously, we run the risk of missing out on much of that potential.

I am super excited to see what will come next from PACIO and Gravity. These are extremely important ways that we are making healthcare more holistic. I am also very excited to see what comes from the other FHIR projects. It is just an exciting time to be in healthcare interoperability.

However, I do hope we keep an eye on data quality and make sure that what we exchange is usable data for all. If we do that, the possibilities are limitless.

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